Free The Data: Patients As Consumers

Standard APIs are beginning to remove the barriers to effective Personal Health Record systems.

Patients seeking to take control of their health data are starting to get the tools to do so.

My last column discussed the emerging liberation of health data that has traditionally been "imprisoned" in proprietary electronic health record (EHR) systems. I pointed to the Meaningful Use Stage 2 requirements for providers to actually share data with their patients and the unveiling of the first few app stores from EHR vendors as a harbinger of things to come.

Parallel changes have been taking place in the personal health record (PHR) space for quite a while now. The topic of personal health records was extensively covered for Information Week back in April 2012 by Anthony Vecchione. Anthony identified several approaches to a PHR based on technology and sponsorship. Microsoft's HealthVault is arguably the best known example of a free, standalone PHR that is managed exclusively by the patient. Of course, this is a space where Google Health played until its PHR shut down in 2011. (Google isn’t out of the health space, however, as demonstrated by its recent announcement of Calico, headed by Apple and Genentech chairman Art Levinson, to develop technologies to tackle health issues related to aging.)

Historically, the standalone PHR approach has been impeded by the need for patients to enter their own health information, a task even my Georgia Tech graduate students typically find formidable. Major insurance plans like Aetna get around this issue by constructing a PHR for their members using data from their claims. The third approach is PHRs tethered to either the physician or health enterprise EHR where, once again, making the patient's data available is simplified by built-in integration.

However, Meaningful Use Stage 2 contains the View, Download, Transmit (VDT) requirement essentially mandating that providers offer patients a vehicle for accessing their electronic records. This essentially removes the onus from the patient and puts it on the health IT vendor community, which is responding with a variety of solutions. For example, NoMoreClipboard.com, originally developed by EHR vendor Medical Informatics Engineering, is now provided as a complete standalone VDT solution for both patient access to their data as well as sharing data they record with their provider.

To their credit, PHR vendors have actually been innovating well ahead of Meaningful Use. Back in 2009, Aetna unveiled SmartSource, a personalized search engine that leverages each patient’s PHR data. HealthVault was launched even earlier, "way back" in 2007. For most of that time, HealthVault has offered an API so that developers could offer web apps that patients can use to leverage their PHR data. Technically inclined readers might enjoy Eric Gunnerson's 14-part series of blog posts on developing HealthVault apps.

Today, according to the HealthVault site, patients can use 141 free web apps, and 226 devices can upload data to their PHRs. Most importantly, in keeping with the requirements of VDT, patients can now upload their medical records into HealthVault in the XML formats -- Continuity of Care Document (CCD) or the older Continuity of Care Record (CCR) -- that certified EHRs must be able to export. Veterans can do the same using the VA’s Blue Button ASCII text file export format. Presumably, the next-generation Blue Button+ format will soon also become a common vehicle for EHR-to-PHR data transfer.

Finally, PHR apps are becoming increasingly sophisticated. The American Heart Association and the American Diabetes Association offer apps with both patient and provider faces that facilitate a patient-provider team in the management of their target conditions.

Georgia Tech and our Interoperability & Integration Innovation Lab (I3L) worked on something similar through an ONC-sponsored HIE Challenge Grant in Rome, Ga. We developed MyJourney Compass, a HealthVault app that provides newly diagnosed cancer patients with highly personalized information and the capability to share in their own care by recording key symptoms for electronic transmission back to their oncologist. The success of this project is leading to efforts to do the same for patients with different conditions and in other venues around our state.

PHRs are also of interest to employers who, after all, may often pay for the consequences of poor healthcare practices by their employees. A number of major companies support Dossia as the PHR solution for the workforce, which includes its own app store and support for data uploads from devices. Taking advantage of its employer sponsorship, Dossia provides employers, plan administrators, and providers with population health management tools including behavior-change and care compliance programs that can spur employee engagement through game dynamics, social engagement, incentives, and messaging.

Free the data and good things can happen!

Happy Holidays as we look forward to an even more exciting New Year in health IT.

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Consumers/patients increasingly want access to their medical information -- for good reasons. First, none of their providers has access to their complete medical record from all their other providers. This often results in serious medical mistakes, unnecessary testing and the lack of coordination. Second, the records often include serious misinformation (a UK study last year found that 30% of patient records include mistakes). Third, they want to participate in their care decisions; they no longer accept the concept that their doctor "knows best."

Unfortunately, none of the systems cited really do the job. Not Healthvault. Not Blue Button. Not Dossia. Providers need complete records not summaries or insurance company billing records. And they need quick, easy access to records and have no time to visit multiple portals to understand their patient's health issues and coordinate care.

Our company, Health Record Corporation, has developed a unique new patient-focused personal health record that does meet the needs of both patients and doctors. It's called MedKaz®, and is available today! (Disclosure: I am Founder & CEO).

It aggregates a patient's complete record from all their providers on a MedKaz Green Drive, along with our patented MedKaz application. The patient owns it, carries it on a key chain, in a wallet or wears it like a pendant or dog tag and gives it to any provider at the point of care, anywhere, anytime, in-network or out-, at home or away. With only two or three clicks, a provider (or patient) can electronically sort, search for and access any record on it — including paper records — even without Internet access! It enables them to avoid mistakes and unnecessary tests, provide better, coordinated care and reduce the cost of care. It's updated for the patient after each encounter.

Doctors and patients who have used it love it because it meets their needs. For more info, visit medkaz.com.

A significant portion of my health care record is available to me online under a password. I can find test results as well as my physicians' notes. I can't tell you how many phone calls this has saved me from having to make, and how much time this has saved for me. It's so great having all the facts available to me succinctly and all in one place, so when I do have to make a phone call, the doctor and I don't have to waste time going over old ground.

Before directly responding to David's excellent question I should mention "Why Personal Health Records Have Flopped", an article by Paul Cerrato on Information Week back in January 2012. He argues, correctly I think, that patients also need incentives to use electronic records and he cites Dossia's ability to work with employers to create those incentives as proof that they work.

The honest answer to David's question is that this whole area needs more study. However, the most recent literature survey I know of on PHR benefits and barriers (http://ojni.org/issues/?p=1995) clearly identifies usability as a factor (as do all the other articles I've read). Hopefully, now that patients can upload their data rather than entering it we'll soon see a study that shows the inpact of what I think will turn out to be an important change.

One reason I think patients would become more interested in PHRs is if they realized the errors these records could contain. There is plenty of anecdotal evidence that some patient records contain erroneous data, perhaps related to off-label use of medications. For example, if you're using an anti-depression medication to quit smoking you could be marked as depressed. Good luck fixing that -- especially if you don't know that record exists.